(The issue here is that the type of training you need to be able to interpret an fMRI and the type of training you need to be able to understand the social dynamics in how public school teachers interact with their students are two very, very different types of training. And since most graduate programs assume that you’re going to be spending 60-80 hours per week working on stuff related to your degree, hardly anyone has time to pursue graduate level work in both of those areas, much less decipher the intersections and implications of the two….But that makes the handful of people who do work on translating neuroscience into implementable best practices all the more valuable.)

David Mandell is one of those people. His background is in public health, so his research focuses more on the social and infrastructural issues around autistic people’s education and treatment than what’s going on in their brains. He covered a huge amount of ground in a relatively short talk, but the takehome message was the point he led with: Translational research, or research that focuses on how to implement lab scientists’ ideas in real-world clinical settings, is “the biggest gap in the autism research portfolio” and that we need to do better.

Hospitalization, special ed, and behavioral interventions are all expensive. And the costs don’t disappear once the autistic kids become adults. “We think about autism as a childhood disorder, but the life expectancy for folks with autism is not that different than the general population,” Mandell pointed out. “They spend most of their lives as adults.”

That might sound like a statement that warrants a “Well, duh”, but given that the vast majority of research on autism focuses on early interventions, treatments, and education strategies for young kids, that fact gets lost more often than it should.

When autistic people grow up, many of them still need specialized care. “Who provides this care?” Mandell asked rhetorically. “Well, as long as they last…the parents. After that, it’s the siblings.”

(Gulp.)

Although research into early interventions has uncovered some strategies that appear to work well in laboratory settings, we know almost nothing how to provide about rehabilitation and vocational services for autistic adults…which often means that the siblings end up having to pay for autistic adults’ housing.

(What if the siblings are writers? Are we just screwed?)

Mandell mentioned that he thinks the research community needs to include more “folks with autism” in the conversations about said research but didn’t say much about how to go about actually doing that.

At this point, the only form of autism care that insurance companies will cover is Applied Behavioral Analysis or ABA, a technique which is very controversial in the autism community. A lot of parents love it and so do some autistic self-advocates, but many autistic self-advocates maintain that it’s borderline-abusive and teaches the child to do what the parent wants rather than become their own person. Even so, ABA can still cost families a fortune, and until recently, it was only available to families that can afford private insurance.

However, in late August, Medicaid announced that it would begin covering ABA, ensuring that low-income families can get early interventions for their autistic children. Mandell thinks this expansion of Medicaid coverage is a game-changer, but since Medicaid only made that announcement two weeks before the talk in question, Mandell had no idea how that would play out.

Mandell’s team could not find a single therapeutic care technique that consistently correlated with decreased hospitalization- although there were several individual cases where some therapies appeared to help the kid function better.

“We tried to make this finding go away,” Mandell said. “We tried to reverse it [by running different types of statistical tests]. We really, really wanted therapeutic care to be important.”

However, “respite care” (which incidentally is a hugely ableist term) did correlate with decreased hospitalization. Mandell thought that it was most likely beneficial because it gave the families a break from dealing with autism and increased their “resiliency”.

This result is particularly confusing when you take into account that several studies have found that carefully administered early interventions can help improve autistic kids’ ability to navigate social situations. (Which means less stress. And more acceptance by family and peers. Which usually leads to a better outcome.) However, those studies took place in carefully controlled university settings; when techniques like the Early Start Denver Model are implemented in less controlled settings, the results are all over the place.

Yeah… It’s really confusing.

Mandell thinks that because teachers and therapists in the real world have much less standardized training than grad students in a lab, variation in therapy administrator may be playing a role in the variation.

One of his team’s key projects is a collaboration with the Philadelphia public school system, where Mandell’s people provide the teachers with training in an autism management system called STAR, ask the teachers about their thoughts and feelings on both the technique and the overall culture of the school, and then ask the teachers to collect data on how well the students do.

When they analyzed the data, they divided the teachers into four groups, based on two parameters. The first was whether they felt like the school system had their back, and the second was how closely they adhered to the STAR procedures Mandell’s team had coached them on.

Again, their findings were almost paradoxical. The “low-organizational-support/low fidelity” group (the teachers who felt that the system didn’t care about them and who didn’t adhere to the guidelines) did almost as well as the closely-adhering teachers who thought their schools were supportive. The teachers who had “high organizational support but low fidelity” were in the middle. And the teachers in the “low support/high fidelity group” (aka the “No one is watching or expecting me to do this, but dammit, I’m going to do it anyway group”) actually fared the worst.

Which suggests that the efficacy of the intervention isn’t simply a function of the intervention itself; it’s also affected by how the person applying the intervention feels.

If that’s not a #stopableismbecause-worthy finding, I don’t know what is.

My Personal Take:

So let’s get THAT finding out of the way first. Even though my inner neurodiversity hashtag activist smirked when she first heard that line about how they couldn’t make therapeutic care be statistically confirmed, I think that finding is actually really bad news.

Think about it: The implication of this study is more or less that all the expensive shrinks in the world can’t guarantee your kid a happy outcome; the only thing that consistently correlates is taking “respite care” or breaks where you’re away from each other occasionally. In other words, the only way to stay sane as an autism parent is to make sure you and your can take breaks from being frustrated with each other.

That’s sad. Not to mention the fact that there are an awful lot of autistic people who don’t like to go to new places, meaning that it’s really hard to convince them to go to camp.

I was a little skeptical of Dr. Mandell’s conjecture about respite care reducing hospitalization by increasing parents “resiliency”. If they’re measuring success based on hospitalization, is the hospitalization rate dropping because the parents are more able to tolerate the kids’ behavior? Or are the kids actually behaving better because they got to have a break from the same circular argument with their parents?

It’s not really clear…

That said, Dr. Mandell made a lot of interesting points, but the one stuck with me most was one that came up in the Q&A. An audience member had asked a question about how other factors like socio-economic status and the number of books in the home might complicate the outcomes. Mandell’s repsonse was that those might well be confounding factors, but most researchers avoid asking questions about what happens to autistic children at home, before they enter pre-K. “There’s been such a long history of parent blaming,” Mandell said. “And it can be a really touchy subject to bring up.”

That simple comment made a lot of things click for me. When I started reading up on autism and autism interventions I noticed that almost all of the writing- the first person accounts of what it’s like to live with an autistic person, the arguments given to secure funding, even the target goals of the intervention- is coming from the parental perspective. And yet, those parents are constantly saying that parents’ perspectives are ignored.

Of course, as a neurodivergent over-educated millenial in her early 20s, I can’t help but roll my eyes at that. It’s hard enough for me to make my voice as an ADHD person heard, and unlike autism, ADHD is perceived as a manageable condition. Autistic people, on the other hand, are constantly barraged by comments about how they’d be better off dead and authority figures who use words like “Aspie” as insults. Can you imagine how hard it is to assert your right to a postiive self-image vis-a-vis your neurodevelopmental patterning, when the largest non-profit working on your disability thinks that you’d be better off never being born? I can’t. And unless you’re autistic or schizophrenic, I bet you can’t either.

But if those parents are reacting to earlier narratives about refrigerator mothers and all that, their whining about being ignored makes a lot more sense. I still think that a sizeable fraction of the autism parent contingent needs to get out of the way and let neurodivergent adults and adolescents tell their own stories and ask for treatment options that will help them reach their self-made goals. But to someone like me, who already knew the refrigerator mother theory was already considered passe, unfounded, and offensive by the time I was old enough to start reading up on psychiatric politics, the parental lament smacks of abled privilege. I think this is a generational divide in the community that both sides need to work on.

However, this lingering sensitivity around parental responsibility may be harming autistic people more than it helps.

A lot of people with “impatient” communication styles steam rollover autistic people’s ideas and treat them like they’re stupid without even realizing it. Communication runs a lot smoother when the allistic people take those differences into account and work with the autistic people’s natural communication styles rather than forcing them to “act normal”. Unfortunately, many autism parents do not realize any of the above and inflict a lot of psychological/self-esteem damage on their kids without realizing what they’re doing.

I say that as one of the impatient people. This talk actually illuminated a lot of the communication issues I encounter when I talk to autistic friends, because they grew up with ABA scripts. I think fast, I talk fast, standing still stresses me out, and sometimes it’s hard to connect with someone who needs to work through a whole script before they can make a decision. And since I’ve been keeping meticulous time management records and writing detail-intensive checklists for myself since I was a pre-teen, I have hard time restraining the eye-rolls when I encounter people my age who don’t seem to know how to write their own checklists…Until this talk, I had always assumed that the ability to write your own checklist was one of the differences between ASD and ADHD brains; it never occurred to me that they use external scripts rather than self-directed checklists because their parents/teachers taught them to wait for cues from others before doing anything.

That scares me.

Partly because I wrote off my ASD peers’ need for step-by-step scripts as an innate incompetence. (That’s ableism on my part.)

And partly because it scares me to think that they weren’t allowed to develop their own self-management strategies the way I was. I have no idea where I would be or who I would be if I hadn’t been allowed to make my own schedules and checklists. I started tracking how much time I spent reading, writing, working out, and writing down my goals for the next day when I was about 10 years old, and was a consistent B+/A- student all the way through K-12 and into my sophomore year of college. When we finally caught my ADHD, it was only because I decided to take myself to a shrink to see if something was wrong with me. If it hadn’t been for my ambition and self-managing behavior, no one would have caught my ADHD. At least, not based on academics or classroom behavior.

If my parents hadn’t allowed me to cultivate that fiercely-independent but oddly self-micro-managing aspect of my personality, I would not be the promising young freelancer who managed to land her first Scientific American gig within her first year out of undergrad. I’d still be beating myself up for being “lazy” and “disorganized” instead of doing something about it. And if my parents hadn’t allowed me to pursue topics I was interested in, even if they seemed weird to other people, I probably never would have become a science writer. I’d probably be stuck at a job that I wouldn’t be able to concentrate on, hating myself because I wouldn’t know what to do with my life.

I know that autistic people have a different set of needs and limitations than allistic ADHD people, but still…What’s the point of an education if it doesn’t teach you how to be an autonomous grown-up version of yourself? (Or at least, attempt to build you toward that point?)

Even though most researchers, psychologists, parents, and teachers who work with autistic children genuinely do want the best for their autistic charges, the vision of a confident, self-directed autistic young adult is conspicuously absent from the dialogue around how to treat/educate autistic children.

That needs to change.

(This talk also got me thinking about how blurry the line between education and medical treatment of neurodivergent people actually is, but we can only cram so much into one recap.)

Biggest Misconception to Avoid:

It’s unlikely that any one intervention is going to work equally well for all ASD kids. But we really have very little information about how effective any of the treatment options actually are…

Best One-Liner:

Dr. Mandell on providing accurate information about available services to autistic people & their families: “We should provide excellent information because we value it. Regardless of our ability, we ower it to them to maximize their happiness, their quality of life, and their ability to be participants in society.”

Best Audience Question:

Audience Member: Everyone agrees that early intervention helps more than late intervention. But some intervention programs drop the ball when it comes to adulthood. In adolescence, ABA isn’t necessarily a good thing. They’re too dependent on scripts and labels. The autistic teens who have been in intensive ABA for long periods of time have less agency. Some of them won’t even go to the bathroom unless someone tells them to. How do we address the need for education/intervention while also addressing the independence issue?

Dr. Mandell:I haven’t looked at that. I would push back by saying that ABA is a broad umbrella and some ABA methods are more didactic than others. If they’re too prescribed, the folks with autism can end up highly dependent on cues and scripts.

Other ABA methods are more developmental and geared to increasing autonomy. And phasing out gradually over time is fundamental to many ABA programs. You actually want to pull back on some of what you’ve taught them to promote independence.

The issue is that when you talk to the parents about phasing out ABA, it becomes an issue of losing services versus developing independence. It’s not always seen as moving the kids to the next level of independence, but as the removal of needed care.

Same audience member: I am positive about it, but some programs seem to be missing what’s right in front of it.

Dr. Mandell: Well, hey. I’m not an interventionist; I just observe them.

Key Terms:

ABA or Applied Behavioral Analysis = umbrella term for techniques that teach patients to exhibit behaviors based on environmental cues, such as facial expressions on other people. It was developed by Ivar Lovaas, the same psychologist who “pioneered” techniques for de-programming gay people. Despite the fact that many autistic people consider ABA to be stressful- even traumatizing– and are adamant that it masks autism “symptoms” rather than alleviating them, it is still by far the most common intervention for autistic children. There are also a lot of autistic people who agree that their ABA has helped them function in mainstream society, but there’s a lot of variation in the techniques, duration, and intensiveness of the intervention…So basically, no easy answers here.

Translational research = a hard-to-define-term that generally refers to the process of making ideas that scientists devise in labs work in real-world settings. Conspicuously under-represented in autism research.

Tl;dr: Neuroscientists are figuring out a lot of stuff about autism in labs, but it’s hard to convert those findings into usable teaching techniques. It’s also hard to tell how well the existing techniques are working.